Invoking Invokana and Type 1 Diabetes

First off, I am going to slow your roll a bit, before you have a hissy.

I’ve said it before. Here’s proof. I may be many things, but I am not a medical professional. The choices that I make in my daily diabetes management, especially when it comes to medications, involve a lot of research and shared decision making with my CDE (who also happens to have Type 1 diabetes).

Please do not take what I say and freak out about what I am choosing to do or march into your health care teams office and demand to do what I am doing.

Off-Label

I began taking Invokana about 3 months ago. It’s a sodium-glucose co-transporter 2 inhibitor. Big words for a little pill. This drug works to lower blood glucose levels by preventing the kidneys from reabsorbing some of the filtered glucose in the blood. That filtered glucose is then… excreted. (You pee it out.)

It’s also prescribed for people with Type 2 diabetes and “not indicated for people with Type 1 diabetes.”

But I knew that some individuals with Type 1 had been prescribed it off-label and saw dramatic results. I asked them privately about their experiences. About a year after I did my original research and inquiry, I approached my CDE.

My A1C didn’t suck, but I was having difficulty with my post-prandial spikes (and subsequent lows), even with pre-bolusing. One of the benefits of taking Invokana as a Type 1, I was told, was the flattening out of the post-meal spikes. That was what I was after.

Why didn’t I choose a medication approved for Type 1s? Because the side effects for that drug were worse than the benefit, given the fact that my stomach is pretty sensitive to start.

My Experience with Invokana

The pill is taken in the morning immediately before my first meal of the day. For someone who isn’t a big breakfast eater, that was my first adjustment. (So, I’m thugging it and it’s a win.) Having the luxury of watching my CGM graph throughout the day, I immediately saw the impact. The post-prandial spike didn’t happen. It was more of a bump. And because I didn’t overcorrect (and I am prone to do…), there wasn’t a low following the high.

Yes, I pee a little more. But because I MUST drink more water to help flush out the glucose, I am also more hydrated than I’ve ever been. (And I’ve… shock… cut down on the amount of Diet Coke I drink.) So, thanks Invokana, for helping me get my daily water dose!

The highs I do have aren’t that high anymore and the lows that I have aren’t that low anymore because I’m not chasing and overcorrecting. I’m happy that it’s working for me.

Artwork by Holly Fischer

Not Everyone Has The Same Experience

It’s worked for me, but it doesn’t work for everyone, just like most drugs.

There are downsides: you are at increased risk for urinary tract infections yeast infections (both men and women). You must be able to drink a lot of water, as this drug can cause dehydration. It can also cause hyperkalemia (high potassium levels in your blood), which can be really, really bad.

If you’ve got any kidney or liver issues, it’s a no-go for the prescription. And if you are planning on becoming pregnant or are breastfeeding… nope. Don’t take it.

Last, but certainly not least, the latest info out has shown that people with Type 2 and Type 1 are at a higher risk for eDKA.

eDKA – Euglycemic Diabetic Ketoacidosis

What’s the difference between DKA and eDKA? Blood glucose levels. In DKA, you’ll find elevated blood glucose levels causing the high level of acidic ketones in the blood. In eDKA, you can have a blood glucose level of 100 mg/dl and still have a high level of ketones. Unlike mild DKA, which people sometimes treat at home with the advice of a medical professional, eDKA is an immediate ER trip, because it can’t be treated at home.

What’s scary about this is simply the lack of knowledge that most Type 2s have about what diabetic ketoacidosis is… they don’t normally have this issue to worry about. (When a Type 2’s BG is high, they can have diabetic hyperglycemic hyperosmolar syndrome without ketones.) If they don’t know what the symptoms of DKA are, they might just assume they have the flu or a stomach bug… and this is incredibly dangerous and possibly fatal.

Even some Type 1s are unaware of what DKA is, how to test for it, and what to do about it, which is why prescribing Invokana to a Type 1 who may not understand how crucial it is to check ketones the minute one starts feeling off is not wise. And even those who do know can still end up in the hospital, because no one expects to be in DKA with a blood glucose level of 113 mg/dl.

Most of the eDKA has occurred after an increase in the Invokana dosage, surgery, illness, or a large reduction in insulin. (My daily insulin reduction has been about 30%, but some have had more…)

Will I Continue To Take Invokana?

Yes. In the three months I’ve taken it, my A1C dropped 4/10th of a point. May not sound like much, but for me, that brought me to my lowest in a long time, and more importantly, the lowest without major hypoglycemia. I’m spending more time in my blood glucose target range, which is exactly where I want to be.

The Takeaway?

Be an activated patient. Talk with your medical care team about what’s going on with the latest research, what’s on the horizon, and what you can do together to be healthy. If your care team doesn’t know what’s going on in diabetes, you can either do the research yourself and talk about it at the next visit… or find a care team that does.

There are a lot of different ways to manage diabetes. One person’s way may not be yours, but it may send you on a journey to find yours… All you need to do is ask and share your knowledge!

Good read. I have early onset cirrhosis due to fatty liver, so I may not be a good fit for this. I’m using Humilin U500 and it’s slow to correct highs after meals for me. This sounds like it would help.

I want to try it. I think I’d get some benefit from it. Did they give you any sort of guidelines about DKA with normal bgs- do you test blood ketones, urine ketones, any time you feel “off”? That scares me a little..but I assume one would feel pretty crappy just like regular DKA.

Heidi, I’m super cautious. eDKA has the same symptoms as DKA, so if I start to feel nauseous, I check ketones immediately. No issues so far, but you and I both know that things can change quickly. I do urine ketones, which I know is delayed.

I’ve mentioned to you before that I think dehydration is a key element of risk in the euglycemic DKA. This last weekend I’ve run into my first complication, again that dreaded dehydration. Let me just say that on Friday night I had started suffering from gastroenteritis. My wife thinks it was the crabcakes I made, but of course she also ate them. And since then I’ve been struggling to absorb any food and fighting dehydration. You know when you get cramps it is bad. I’ve reverted to chugging powerade zero and bouillon with salt and lite salt. I probably should have just suspended the SGLT on Friday. But on the bright side, I lost about 7 pounds over the weekend. And tomorrow I’m off to AADE. I better get over this quick cause I’m looking forward to Nawlins food.

If it works for you stick with it crystal and am sure it will help other T1s but it is not for everyone i think in the UK it is still awaiting approval,Thanks for sharing i did try metoformin with MDI and it did work for my A1C when i hit bad illness with my CNS and steriods that hit my numbers the meto it lowed my A1C as it hit 12%,Mine know averages 5.6% since my health has improved but i do have use steriods from time to time

I just wanted to let you know that after your recent post about various clinical trials, I am all enrolled in one and sporting a fancy shmancy dexcom! My endo is at UW in Seattle, a major diabetes research center, but she didn’t think I was interested in participating in any studies. So anyways…. here I am, getting great data (holy moly is Dexcom kicking my medtronic CGM’s butt), my wonderful endo has another participant in her study, and all of us D-havers are closer to getting CGMs more easily covered by insurance and another step towards an artificial pancreas.